Speaker/MarilynSchmidt (Aug 26, 2008 1:57:57 PM)My name is Marilyn Schmidt and I am a nurse coordinator for our PH program in Lincoln, NE.

Speaker/DebbieLevine (Aug 26, 2008 1:59:01 PM)Hello Everyone. I am very excited to hear your questions. This will be a follow-up to the wonderful session we had at the PHA Conference.

Mike (Aug 26, 2008 1:59:04 PM)Howdy Mam and how is it in NE this noon

doccharli (Aug 26, 2008 1:59:07 PM)Hi Marilyn

Colleen (Aug 26, 2008 1:59:30 PM)Hi Marilyn :)

doccharli (Aug 26, 2008 2:00:01 PM)Hi Debbie

Speaker/DebbieLevine (Aug 26, 2008 2:00:35 PM)My name is Debbie Levine. I am the medical director of the Medical Center at the University of Texas. I am happy to be with you today and thank you for joining the chat.

Diane R-NC (Aug 26, 2008 2:00:55 PM)Hello Everyone

SeñoraH (Aug 26, 2008 2:02:20 PM)For those of us who do not have a pump, what should be in our "refrigerator-front bag" for the EMTs to find?

Speaker/MarilynSchmidt (Aug 26, 2008 2:02:20 PM)Because of your PH, you have special needs that emergency personnel should be aware of. It would be a good idea to have a brief one page information sheet available about PH. Include your list of medication and any special needs that are specific to you. Things like being on coumadin or no nitrates because of sildenafil are examples of information to include

SeñoraH (Aug 26, 2008 2:02:30 PM)Right, I'm on Ventavis

Speaker/MarilynSchmidt (Aug 26, 2008 2:04:34 PM)Include information about Ventavis and be prepared to bring in your device and supplies to the hospital or doctors office, etc.

SeñoraH (Aug 26, 2008 2:04:43 PM)For those of us who do not have a pump, what should be in our "refrigerator-front bag" for the EMTs to find?

Speaker/DebbieLevine (Aug 26, 2008 2:04:43 PM)If you are not on pump therapy, then for the EMTs you will need a complete medication list and your doctor's name and phone number, as well as the pharmacists and emergency contacts information.

Speaker/MarilynSchmidt (Aug 26, 2008 2:05:13 PM)Are all of you out there comfortable with how you would respond if a emergency arises?

Colleen (Aug 26, 2008 2:06:30 PM)I have lists of my meds available, and doctor info, but not posted on my fridge. I will make sure I do that!

doccharli (Aug 26, 2008 2:08:05 PM)I do have those lists made up and I will put one on the fridge

Phena (Aug 26, 2008 2:08:48 PM)What about traveling with a group on a bus to rural wild areas of Northern Minnesota like Grand Marais and Ely? The Director is afraid to take me along. How can I reassure him that I'll be o.k? This is a Golden Agers (senior) group for four days.

Cindy (Aug 26, 2008 2:09:07 PM)I will copy the info in my purse and put there

doccharli (Aug 26, 2008 2:10:13 PM)What can our support groups do to educate our local fire departments and EMT about our special needs?

Speaker/MarilynSchmidt (Aug 26, 2008 2:10:13 PM)It would be great to setup a joint support group meeting and EMS meeting with a speaker to provide information, answer questions and plan how to respond if for example an infusion is interrupted. Also, you can work with your PH center to provide written information that gives instruction should an emergency take place. These are already available through the PHA if you want to talk with responders yourself

Speaker/DebbieLevine (Aug 26, 2008 2:10:25 PM)In the event you are unable to give information, your family and close friends should have the same information, as well as your local EMTs or fire rescue team. Also, go to your local ER with your disease and medication information so that you are comfortable with that facility. Has anyone taken this step? Also, there are wallet sized card that you can carry around that provide helpful information in case of an emergency.

Diane R-NC (Aug 26, 2008 2:12:23 PM)I went to my local fire/emt service and they looked at me wide eyed and confused..they had never heard of PH

doccharli (Aug 26, 2008 2:13:01 PM)I have the information all typed up and in my purse and my local hospital has a chart on me with this infor.

SeñoraH (Aug 26, 2008 2:13:18 PM)I went to my local firehouse and they didn't know about PH, but I took them cookies and they remembered that...

Mike (Aug 26, 2008 2:13:51 PM)I had a change to try out my Emergency Plan 1st hand this past wknd. I went to the ER due to fluid overload of 8 lbs, I had in hand a folder with the info sheets on my specific PH Meds. Also a list of current Meds, my records and a prescription to call my PH Doctor with his number

Phena (Aug 26, 2008 2:13:58 PM)What about traveling with a group on a bus to rural wild areas of Northern Minnesota like Grand Marais and Ely? The Director is afraid to take me along. How can I reassure him that I'll be o.k? This is a Golden Agers (senior) group for four days.

Speaker/MarilynSchmidt (Aug 26, 2008 2:13:58 PM)Talk with your PH physician and make sure he or she is in agreement that you able to make such a remote trip. Then plan, plan, plan so that you have all medication related supplies, oxygen, etc. Find out where the closet hospital, etc is in the area you will be going and it may be good to contact a medical person just to let them know you are there. Then have fun!

doccharli (Aug 26, 2008 2:14:03 PM)Yes, Diane...that is exactly what I am talking about.....they are not very aware of our disease and it's special needs

Speaker/DebbieLevine (Aug 26, 2008 2:14:30 PM)Also, I and many of the physicians with support groups have gone out with their nurses to teach local fire stations and EMT about PH and its treatment. Also, we have a form for our patients that can be used to get to know their local EMT, which helps them get to know the local emergency services. Support groups are important to help with this, including slides show on how to complete these forms and what steps to take. It is important to get to know your local ER doctors and nurses and educate them about PH, your medications, and local pharmacy information.

Mike (Aug 26, 2008 2:15:04 PM)I also keep a medi set with a weeks full of my PH oral meds in case of addmision

doccharli (Aug 26, 2008 2:15:54 PM)EMT's....thanks for the cookies idea....we'll use it

Colleen (Aug 26, 2008 2:16:06 PM)Who would we ask for if we brought our info to the ER?

Speaker/MarilynSchmidt (Aug 26, 2008 2:16:06 PM)When I contact local hospital facilities I usually start with the Director of Nursing, especially if it is a small hospital. Also, a good place to start would be the nurse manager of the ER

Speaker/DebbieLevine (Aug 26, 2008 2:16:30 PM)Phena this is a great opportunity to educate the Director and others about PH. Also, invite your doctor and nurse to speak with him/her about PH and its treatments. Or if not possible, the physician could send a note explaining the illness and your ability to participate.

doccharli (Aug 26, 2008 2:16:45 PM)I do that too, Mike

Mike (Aug 26, 2008 2:16:53 PM)Our support group meets at the local fire station and Oct's mtg we will have EMS folks there to educate them as an Inservice for them several accrdo nurses will be the speakers for us

doccharli (Aug 26, 2008 2:18:16 PM)Our support group here in Western WA covers a very wide area and many many fire departments......

Cindy (Aug 26, 2008 2:19:03 PM)I know no nitrates for viagra and revatio but what if EMS wants to give you morphine for say chest pain since morphine is a respiratory depressant? if that is a no-no what is a good alternative.

Speaker/DebbieLevine (Aug 26, 2008 2:19:03 PM)I think the question is difficult to answer, if I don't know your case, without a history, list of meds, etc. It would be best to discuss this with your doctor. It is a fragile issue, since it depends on the severity of the disease and your other medical problems.

doccharli (Aug 26, 2008 2:19:07 PM)Members of our group all live in different fire districts

Mike (Aug 26, 2008 2:19:26 PM)the audio from confferance has some good information on the Emergency Situations Session, I even took note of it to share with our guest speakers

Diane R-NC (Aug 26, 2008 2:19:30 PM)How can we get this information? My support group wants to inform the local fire/emt service in the area and we aren't sure where to begin.

Speaker/MarilynSchmidt (Aug 26, 2008 2:19:30 PM)I think it is always better to meet with local rescue personnel and then leave them with written materials for reference. The PHA has prewritten material and your PH center will be excellent because they can make it specific to your medication.

Phena (Aug 26, 2008 2:19:50 PM)Last week when I was to the dentist, she thought PH Hypertension was regular hypertension. I had to educate her by giving her the pages from the PHAssociation.org website. She is just three years out from dental school practicing in a large Twin Cities suburb.

Diane R-NC (Aug 26, 2008 2:20:56 PM)the forms that we can use will be available on the weblink that webmaster Diane just posted ?

ModeratorRebekahMacfie (Aug 26, 2008 2:20:56 PM)yes, those pages have lots of information you can use when you meet with your EMTs

Speaker/DebbieLevine (Aug 26, 2008 2:20:57 PM)I agree with Marilyn, that having a support group meeting with medical professionals to discuss this with everyone , including patients, EMTs and fire rescue personnel. Great suggestion Marilyn!

Mike (Aug 26, 2008 2:20:59 PM)same here on different districts also we have them from three different state we r inviting representives from each department for they have information to take back to their squads

Speaker/DebbieLevine (Aug 26, 2008 2:23:36 PM)Also, if the support group has a newsletter, it would helpful to feature this topic with steps to take to educate emergency services. Your physician and nurse should have information and tips they can provide.

Mike (Aug 26, 2008 2:23:48 PM)th, I will use the notes from here too as a resource but really if you haven't listen to the audio from confernace please do, can someone pull up the link for the emgency situations and paste it here please

doccharli (Aug 26, 2008 2:25:35 PM)Will do Mike. And Debbie, we are just getting our support group reorganized so no news letter yet....hopefully in the near future we will have one of those too...and thanks for that link to the conference session

Speaker/MarilynSchmidt (Aug 26, 2008 2:25:56 PM)Here are some tips to think about that I give my patients, especially those on infusion medications. Think ahead with these four actions: Stay calm, Call 911, minimize activity and use O2 if you have it available.

Speaker/DebbieLevine (Aug 26, 2008 2:26:01 PM)In many cases, especially in small towns you and your families are the most educated about this disease and sharing this info is help to the medical community and others. You and the support groups are truly appreciated by all parts of the medical community.

Mike (Aug 26, 2008 2:29:16 PM)I also am making a seperate flyer for our meeting to send out to the EMS folks in our area, this flyer is geared towards them specifically. I will post that soon in the SG Leaders folders on our yahoo site, u can use this as an example, Accredo Nurses assisted me with it plus my Mrs who is a nurse

Speaker/DebbieLevine (Aug 26, 2008 2:30:12 PM)I agree with Marilyn. I would add a fifth tip, Be Ready with phone numbers, a complete medication list, and other important information readily accessible for EMTs and others in case you need to go to the hospital. Plan as if you will be admitted to the hospital and bring your own meds and your doctor's numbers. Many of these local hospitals do not have you meds, so be prepared with a few days supply.

Speaker/DebbieLevine (Aug 26, 2008 2:30:57 PM)Mike that is excellent and so appreciated.

Diane R-NC (Aug 26, 2008 2:31:13 PM)Our support group is going to try to reach the different emt's in our area at their monthly meetings,,,are there any special handouts we should have for this besides the ones on the website?

Speaker/MarilynSchmidt (Aug 26, 2008 2:31:13 PM)Actually the PHA handouts are designed to be good general information that fire/emt services should know. I would stick with that and then additional information can then be provided to a specific responding unit that might be in your area that applies specifically to you

SeñoraH (Aug 26, 2008 2:31:17 PM)Ha! Last time I did that I had a suitcase with nothing but meds... and boy, does the ER pay attention when you show up with all that stuff!

Cindy (Aug 26, 2008 2:33:46 PM)I picked up a few of those Emergency 101 sheets at conference. Who do we contact to get more?

ModeratorRebekahMacfie (Aug 26, 2008 2:33:46 PM)Cindy, you can contact me at Rebekah@PHAssociation.org or 240-485-0770 to order more

Cindy (Aug 26, 2008 2:34:49 PM)Thanks

Speaker/MarilynSchmidt (Aug 26, 2008 2:34:53 PM)Here are some red flags for you to contact your doctor or EMS. Report fever of unknown origin if you have a central line, any rapidly developing changes in shortness of breath, increased oxygen needs, increased weakness, change in normal mucus production, chest pain, palpitations, fainting or near-fainting

Speaker/DebbieLevine (Aug 26, 2008 2:35:14 PM)Also, I know I have mentioned this before, one of the biggest help for outside doctors is your PH doctors information. I have many patients in rural outlining areas and I look forward to hearing from the physicians in these areas to discuss and consult about a patient or just to simply answer a question.

Mike (Aug 26, 2008 2:35:30 PM)Oh , something else for those who have a puffer regulator one of those conservative ones for the sm portables, CARRY SPARE BATTERIES, I was once two hours away from home and the batteries died

Speaker/DebbieLevine (Aug 26, 2008 2:38:43 PM)Thank you Mike. That is very important, since some of those hospitals are far away, plus carry an extra pump. Also, if you arrive at the hospitals tell them immediately that you need oxygen, so that you do not use your spare tank. Also, if you feel that there is an emergent problem, call you PH doc so that they can call ahead and talk to the ER doctor. This will moves thing along so that you are seen sooner and have better care.

Speaker/MarilynSchmidt (Aug 26, 2008 2:39:25 PM)If you are unable to give information and are not with family, etc who can supply the information, it is good to carry maybe a laminated short sheet with your information and carry in your wallet, bag, etc. I do encourage Medic alert though because this is the universal thing responders will look for

Speaker/DebbieLevine (Aug 26, 2008 2:40:10 PM)Yes, the EMTs always look in the wallet. Have information in the front of your wallet. Also, your cell phone for ICE (in case of emergency) numbers as well as medication pack.

Phena (Aug 26, 2008 2:41:46 PM)Can someone please recommend an oximeter that I can purchase online that is made in the USA or a dependable one that measures pulse rate, also, that I could take on the Golden Ager bus trip in case of an emergency? I need specific information as to brand and company since I can see myself ordering an insufficient model. Thank you.

Speaker/DebbieLevine (Aug 26, 2008 2:41:46 PM)If you have increased problems with breathing and/or swelling you should go to the ER for further evaluation.

Mike (Aug 26, 2008 2:42:45 PM)I backed up with fluid this past weekend what signs should I look for pulmonary edema?

Mike (Aug 26, 2008 2:43:27 PM)I backed up with fluid this past weekend what signs should I look for pulmonary edema?

Speaker/MarilynSchmidt (Aug 26, 2008 2:43:27 PM)Think of pulmonary edema as "wet lungs" . This means that the fluid part of the blood backs up into the tiny air sacs in the lungs. Symptoms include increased shortness of breath that may be better by sitting upright, and cough that may produce very thin even blood -tinged mucus. I agree with Dr. Levine that you should always go to the ER in this situation

Speaker/DebbieLevine (Aug 26, 2008 2:43:42 PM)Your doctor may have helpful information as well about the better oximeter.

Mike (Aug 26, 2008 2:44:34 PM)PHA had a good info sheet about Medic Alert bracelets, can someone from PHA put that in a pdf file to post for others to view? I put the info in our last newsletter

Colleen (Aug 26, 2008 2:44:37 PM)Phena, there was just a post on the PH boards about oximeters. You might want to check that out, many people had suggestions of where to buy one.

Phena (Aug 26, 2008 2:44:43 PM)Can someone please recommend an oximeter that I can purchase online that is made in the USA or a dependable one that measures pulse rate, also, that I could take on the Golden Ager bus trip in case of an emergency? I need specific information as to brand and company since I can see myself ordering an insufficient model. Thank you.

Speaker/MarilynSchmidt (Aug 26, 2008 2:44:43 PM)There are some that are better than others. Nelcor is a good brand that is reliable.

mab (Aug 26, 2008 2:48:00 PM)I want to know what are you consider an emergency situation

Speaker/DebbieLevine (Aug 26, 2008 2:48:01 PM)In terms of emergency situations I agree with what Marilyn posted previously. In addition, anything that makes you feel uncomfortable don't hesitate to go in to be evaluated. Plus, line disruption, signs of infection, such as fluid or bleeding or puss around the area, acute shortness of breath, chest pain, faintness or passing out.

Speaker/DebbieLevine (Aug 26, 2008 2:49:38 PM)Just to restate, it is important to have the in case of emergency information readily accessible and available to family and friends as well. Letting them know ahead of time where the information is kept would be very helpful.

Speaker/DebbieLevine (Aug 26, 2008 2:50:55 PM)In a few minutes we will end the chat, are there any final questions about emergencies?

doccharli (Aug 26, 2008 2:52:35 PM)yes, how do I save this chat session?

ModeratorDiane (Aug 26, 2008 2:52:36 PM)We will be posting the chat transcript this afternoon at http://www.phassociation.org/Classroom.

doccharli (Aug 26, 2008 2:52:54 PM)thanks.

Colleen (Aug 26, 2008 2:52:57 PM)I don't have any other questions at this time, but thank you for taking the time to do this! It is much appreciated!

Diane R-NC (Aug 26, 2008 2:53:06 PM)thank you

Mike (Aug 26, 2008 2:53:15 PM)Ill 2nd that motion

Cindy (Aug 26, 2008 2:53:28 PM)Thanks a bunch

doccharli (Aug 26, 2008 2:53:33 PM)Thanks for all of the great ideas and information everyone

mab (Aug 26, 2008 2:53:40 PM)If you have chest pain for a week what the doctor have to doSpeaker/MarilynSchmidt (Aug 26, 2008 2:53:40 PM)If you are Flolan or Remodulin chest pain may be an indication that you need to increase the dosage. You need to be reporting this to your PH doctor so that the appropriate instructions or evaluations can take place

Phena (Aug 26, 2008 2:53:44 PM)Thank you.

PHAwebmasterDiane (Aug 26, 2008 2:53:46 PM)Dr. Levine brings up a good point about keeping your family and friends informed. It is also good to have someone with you in the hospital to advocate for you to make sure they are paying attention to your particular needs. It can be difficult for you to do yourself sometimes as you are receiving the care.

Speaker/MarilynSchmidt (Aug 26, 2008 2:54:13 PM)Just a reminder to all things can happen suddenly and sometimes when you least expect it so preparation will be the key to helping your potential emergency be handled efficiently and with the best of care.

mab (Aug 26, 2008 2:54:25 PM)If you have chest pain for a week what the doctor have to do

Speaker/DebbieLevine (Aug 26, 2008 2:54:25 PM)Mab, you should probably should see your PH physician or go to the ER, but you definitely need to see a medical professional.

Speaker/DebbieLevine (Aug 26, 2008 2:54:46 PM)These have been excellent questions. It is best to be prepared ahead of time in case of an emergency. Marilyn has brought up some great points. I thank her for her great ideas and suggestions.

ModeratorRebekahMacfie (Aug 26, 2008 2:55:02 PM)Thank you all for attending this chat and thank you to our speakers, Marilyn Schmidt and Dr. Levine

Speaker/MarilynSchmidt (Aug 26, 2008 2:55:43 PM)Thank you for listening. Hope it was helpful.

Diane R-NC (Aug 26, 2008 2:55:59 PM)it was ,,very !!

Colleen (Aug 26, 2008 2:56:01 PM)Thank you, Marilyn and Dr. Levine :)

PHAwebmasterDiane (Aug 26, 2008 2:56:03 PM)Thank you everyone, and just to reiterate, the transcript for this chat will be at http://www.phassociation.org/Classroom. and Mike, be prepared is also the Girl Scount motto :)

Mike (Aug 26, 2008 2:56:12 PM)it was very informative

Speaker/DebbieLevine (Aug 26, 2008 2:56:38 PM)I appreciate all of you coming out with great ideas and questions. PHA is a wonderful resource for all. Thank you to Rebekah, Marilyn, Diane and Robyn for all you help.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.